Feeling so frustrated, confused...

I'm sure a few of you may remember the issues I've had with Riley. Last summer I began suspecting sensory issues, due to her biting, her constant need for movement, and the crazy habit of jumping incessantly in her crib. Had her evaluated by EI, she was rejected....she didn't even come close because her motor, cognitive, etc skills were all there but they did see a sensory issue. So I went my own way, had her evaluated privately. They suggested OT twice a week, as Riley's short attention span, low frustration tolerance kept her from focusing on any of her fine motor skills, so they saw a potential problem there, as well as her sensory processing issues.

Well, we've been doing OT since December. I love her OT, have learned a ton from her. She had suggested We go to a developmental pediatrician for their recommendations, basically to get her in a special preschool with more one on one, smaller classes. The doctor, while very nice, seemed to feel it was a joke because Riley was so damn smart. Granted, Riley wanted nothing to do with a lot of the activities and wanted to just do her own thing. The doctor did not agree Riley needed a special school (part of me agreed because programs here in NJ are quite different, how I wish we had a SEIT here). She felt we could benefit from behavioral management counseling to help with Riley's constant avoidance. Otherwise, she said if we still had a problem by the time she enters kindergarten, have her evaluated then (ADHD, maybe). Though we both doubted ADHD as she can attend to several things, especially those that interest her. I'm certain this doctor does not take sensory seeking issues very seriously. I truly believe Riley's lack of attention comes from her sensory seeking needs.

Sorry to go on but....I have so many damn things running through my head. Am I just a crazy mom trying to fix my kid? Should I just leave it alone? Once I started reading up on SPD, I was so sure OT would help her. Yes, she has improved....but is that age, maturity? She gets OT a half hour once a week.....but how can that really make a difference?? Am I just being impatient? Should her OT have created a sensory diet by now? I think my concerns have finally gotten through to her and that is our next step....

But I can't help but wonder if I'm just a crazy mother right now. I often hear "she's not that bad." Hell, she is pretty freaking amazing. But when I walk into her classroom and all the kids are attending to activities like coloring, crafts, etc and Riley is wandering, dancing, looking in the mirror, play-acting...I get so sad. I know she's a creative, energetic kid and I would never change that. And I know she's listening even when she's wandering during circle time. Or at dance class when all she wants to do is run around.

And yes, she's barely 3. Do I expect too much?? Do I even have a right to be venting here???

Sorry to go on....I'm so messed up over this. If you got through this, thanks for listening.

Message edited 3/21/2012 10:18:14 PM.

Re: Feeling so frustrated, confused...

It really sounds as if there is more going on here than just some sensory seeking. What does her teachers say about her behaviors? Is she Difficult to re direct back to the table when all the other kids are engaged in a table top activity and she is dancing infront of a mirror? How does she tolerate adult directed demands? Can she follow simple directions? do they see her low frustration tolerance at school too? She sounds like a smart little girl who is very self directed. Is she stubborn/difficult to discipline? You said the dev ped recommended a behavioral consult to address her avoidence, I assume you mean task avoidence? It definitely doesn't sound like she would qualify for a special ed program based upon her strengths compared to her behaviors and frustration tolerance.

As for OT, if she is very sensory seeking, the OT should most definately give you either a sensory diet or a list of specific activites to do with her at home. Does she have difficulty modulating her arousal level? It sounds as if the OT feels she needs more structure ( thereby recommended a smaller class/ special ed program) . OT alone will not change her other behaviors, it will just reduce the sensory seeking. Does she still bite?

Its good that you brought her to the dev ped just to rule anything out. Your certianly not a being a crazy mom! Its good to nip these things in the bud early before the start to impact learning. Whould you be able to hire a behavioal consultant to observe Reily and give you and her teachers some strategies to use?

Re: Feeling so frustrated, confused...

First, yes you definitely have a right to be venting here. You can vent anywhere you want.

Second, I wish I had answers for you but one thing I DO know from seeing so many other stories on this board is that "mommy gut" instincts are usually never wrong. If you think it's something more than just being her age then you are not crazy at all for trying to figure out what it is.

I don't know how you would go about it, though I will think about it, but I do think she would benefit from being in a smaller classroom/daycare situation. Something with a smaller adult:child ratio. Your OT definitely should give you a sensory diet to follow on your own. Maybe something like, activity upon waking, things to do before sitting down for circle time in school (would the teachers be on board for that?), activity for waking up from naptime, etc. Has your OT mentioned a compression vest or something like that?

Did you say you are friends with Miss Christina (@KCH)? Have you mentioned any of this to her? She might have some ideas.

And let's get our kids together ASAP! DS gets out at 2:30 every day.

Re: Feeling so frustrated, confused...

My son was very borderline. He had behaviors that were troubling though (hitting other children giving them bear hugs that were almost dangerous). He also avoided activities at school, and his teachers had trouble getting him involved and part of the group. He would wander around singing to himself.

He had speech through EI, and I had concerns about his social development at the time, but at 2, his social development was considered on target. At 3.5 however, he was definitely behind and I contacted our CPSE committee for another evaluation, where it was determined he showed signs of PDD-NOS. Since then, he has been diagnosed with Tourette Syndrome and he shows compulsive behaviors, so I would like to have him seen again by someone who understands tic disorders and OCDs. I do wonder if this is really his whole problem, but I digress.

Anyway, I guess the point of sharing my story is that this is all very confusing, and a lot of children have problem behaviors, but don't fit neatly into any one diagnosis. If your daughter is not 3, ask for another EI evaluation. If she is 3, contact your CPSE committee and ask for a psychoglical evaluation in addition to OT, speech, and any other areas you feel are troubling. She may fit criteria now that she did not fit at 2. Also, involve her teachers and private OT--I really think this made a big difference for us, when it wasn't just me saying he was struggling (should be enough, but I'm afraid it isn't).

Re: Feeling so frustrated, confused...

Re: Feeling so frustrated, confused...

At this point there is not much the school district can do for you because she doesnt have difficulty learning. Your best bet is to address the behavior, lack of compliance with adult directed demands and the sensory seeking/modulation of her arousal level. The sensory stuff at this point does not seem as big of a concern as the behavior piece. Why cant her teachers get her back to the table after she elopes from an activity? What strategies do you use at home for discipline? What do you do when you place a demand and she ignores it?

Re: Feeling so frustrated, confused...

I think if a mommy's gut feeling is that something is a little off then by all means you should pursue it. Don't let anyone tell you you're crazy or you shouldn't worry! You know her better than anyone!!!
Your little girl sounds exactly like a student I had. She has know been classified with ODD (oppositional defiance disorder) I'm not saying this is what your daughter has, but maybe you could read up more about it and see if some of the characterists fit and maybe talk to your ped and see what he says.

Message edited 3/26/2012 1:30:55 PM.

Re: Feeling so frustrated, confused...

Aww, Tara, I am so sorry you are going through all of this.
Reese has a SPD. She is only 19mo old, so we don't have any school experiences yet. But, she receives EI services here, in NC (OT and feeding).
She has had a lot of behavioral issues that are tied to her sensory issues (when she is overstimulated).

There aren't a lot of professionals that know a lot about SPD. I have a close friend who has two children with SPD. We thought her oldest on would need more support in school, but he has done well so far. He does still have difficulty at home, but maturation has been helping.

Take it one day at a time. It's difficult to "treat" SPD because it is really ever-changing. You will drive yourself crazy if you try to address everything at once. Take the biggest issue/behavior, work on that, then go from there.

Message me if you want to chat more..